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ALS Update #2: Keep Moving Forward/1/3/14

I’m feeling lead to offer you an update on my ALS journey. My hope and prayer is that something here will normalize our humanity in the dark places of struggle and loss. Yes, the above link is the theme to mission impossible. It’s not mockery to pain, but keeping some sense of humor in this is critical.

Physically:

I’m on a v-pap machine at night and some during the day that gives my life-span and quality of life a 30% boost. No oxygen, just air blowing in and out.

*I’m in private water therapy twice a week. My blue smurf toes pink right up when they dip into the warm water. I sleep better on water therapy days and pain is reduced by 50% after 50 minutes of water therapy. I’ve lost strength and skill in the pool too. The whole therapy fitness center is very good to me. They go above and beyond in caring for me and investing in my wellness. Thank you, Alanna 🙂 Words cannot express. (sweet tears)

*I’m not eating or drinking well. It’s a struggle to get down two smoothies a day (packed with vitamins, protein and calories) and a small mug of soup. We are heading toward a feeding tube 😦 I’m trying hard to force my resolve to this procedure.

*My left hand is impaired and it’s moving into my right hand. Arms too weak to brush the top of my head. With help, I can straighten legs and support a little of my weight to twist with Bucky to transfer me some of the time. Bucky never liked to dance and now he finds himself doing a twist and shout dance.

*I can’t move myself in bed. It gets claustrophobic at times, especially at night. I think I add a new pillow every night. Bucky affectionately calls it my “pillow palace!!!” He still has an edge to cling too when the mattress topper does not slip. We are looking into a King/Adjustable bed.

*My family and a couple of friends can make out my poor speech in context. It continues to deteriorate.

*I stay active with a stander once a week and my pedlar. I pedal arms and legs to beautiful destinations, two to three times a week.

Emotionally:

*I’m all over the place but most of that happens inside my thought and heart life.

*Oh I get crabby (we don’t even have to go to the beach to feel the pinch!) and rivers of tears flow some days/nights

*I work really HARD to let go of the crushing losses and focus on the promises of love in front of me.

*Sometimes, I’m just in shut down survival mode. It’s not a choice I make. If the moment and nervous system allow, I can engage emotionally for short periods of time.

*I struggle with balancing the need for companionship, pressure to communicate and over-stimulation. It’s beyond odd since I’m out going by nature and fuel up by companionship. Honestly, pre-disease, I can’t remember ever being over-stimulated (not even at Chuckie-Cheese Birthday Parties!).

*It takes courage to move out of my “safe zone,”from my bedroom to other parts of the house. I have to confront my old self and all the things that need doing. It stretches me further to revisit my old playgrounds: the girls school and our church.

*I see my husband and girls growing by leaps and bounds. The cost is high, (The rate of inflation is terrible!) but on a good day I can see God using this for good in their lives. They are ever so gracious in expressing love and care for me. 🙂

*I’ve never known this kind of love and faithful service. Friends donate time, groceries, expensive medicines, exercise equipment. Every act both large and small invests in our family and reaches Kingdom-ward. My gratitude can’t begin to embrace any of it. I just know, this love shared has a life of it’s own, that reaches far beyond our circumstances into His arms. It’s a deep, rich blessing to receive so much of God’s heart through our family and friends. It’s nothing short of amazing.

*It’s messy glory for sure. We all get impatient, tired, overwhelmed and frustrated, but we are here, together for better or for worse. We are making great memories and attempting to live our lives to the fullest.

*We are looking at Tobii computer software that will allow me to communicate some through typing and an eye gaze system.

Spiritually:

*I find myself gravitating toward pastors/friends that know deep griefand still speak their Faith. Not to the exclusion of others, but it offers a common language.

*I lived for years in a romancing phase with the Lord, and I guess in the innocence of a young bride, I expected it to be that way forever. It was such a sweet, playful, beautiful place to grow and live.

*Worship and prayer were intermingled in ways I could not comprehend. I could spend long periods of time in conference plannings/ministry workings/Bible Studies or in front of a lake, under a tree, on a swing or walking the beach in my Lord’s full companionship. No sense of time, just embraced in His goodness. I loved to take my shoes off in His presence.

*I don’t know where the Lord and I are now, but He knows and that’s enough for me. It’s still a we in me. I can tell you, “we,” patterns out into gritty obedience, blind faith, my return to classical music and loving forward.

*Prayer carries a higher, wider, deeper significance in my heart life. It involves very simple, short phrases while I lean on the Holy Spirit to perfect it for His Throne Room. I had such a thesis in my prayer language before in my old girl self. I can’t help but wonder is God is relieved and pleased I go right to the point now. “Help, Susie Q, she sure needs your love.”

How are we fighting back for life? Prayer, Pulse Steroids Treatments once a month, love, love, love and hope for research breakthroughs in treatments. I could not do a moment of “this” without my husband, Bucky’s strong arms of love and support. During intimate moments of anxiety/fear gripping me in the icy fingers of lies/deceit, he will hold me and say, “We’re okay. We’re figuring this out. We’re okay.”

This Scripture sums it up so beautifully, as my Community Life Verse: I know Truth, like I would not have experienced it, in “The Land of The Living,” because of this difficult trial in our lives. . .

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36 thoughts on “ALS Update #2: Keep Moving Forward/1/3/14”

Tracey, you are such an incredible lady, wife and mother. I have seen this in a myriad of ways as I’ve gotten to know your family and your sweet girls through the years. One of the lessons that I know you work to impart upon them is a true reliance upon Christ. In my experience, the strongest teaching is action. You show your personal reliance upon faith daily. Through your generous sharing of your journey, you are living out your faith as an example for not only your sweet daughters, but also for all of us. Thank you, for your inspiring courage, for your dependent faith, and for your sweet heart. I am blessed to be able to learn from your faith-in-action, and I pray that I will be able to put my faith into action as I am called to as well. ~Always, Mary Ellen Courville

Dear Mary Ellen,
As a teacher of my cherished daughters, your voice carries much weight. Your generous encouragement goes a long way 🙂 You have soooo blessed our family with your teachers heart and now you personally bless me.Thank you muchly. . . and always!!!

I am still wrapping my mind around all that you shared yesterday. Your honesty (peeling back another layer) as always amazes me. You are a guiding light – a true testament to the fact that although things happen to us that seem impossible — all is possible through our faith in our Lord. You have enriched my life beyond words. Much love.

Dearest Tracey, thank you for your candor as you and your family navigate unfamiliar territory. Your faith and perseverance is inspiring and I thank you for sharing these moments with us. Jim and I and our kids have had you & your family on our refrigerator prayer list for months and we will continue to lift you up to the One who heals! May He continue to bless, guide, inspire and nurture you daily! With much love, Kathrin

Hi Kathrin, thank you for reading and commenting. It is so uplifting to hear from our community. As you would imagine, it was a difficult post to write and press the “publish button.” The Lord has given such sweet fruit from our readers. Thank you for the love and prayers. love, twe

Yours is a special family, Tracey. Your girls continue to grow into strong and beautiful women, and you write such sweet, edifying things of Bucky. You continue to shape your girls through love, listening, sharing…maybe not like before -but maybe even more powerfully. I hate this road you are on, but I am in awe of your faithfulness…I know it’s our Lord at work in you! Your love for the Lord and your faith that HE IS GOOD minister to so many! I pray that He blesses you, comforts you, and shines graciously in your heart. I love you!!

HI Angi,
Thank you for following and such gracious words. I so want to pour every ounce of goodness I have into my little women. No nothing is like it was before, before, but God is sooo working this road. Your prayers are appreciated and felt by us. Your comments ministered to me 🙂 I love you too. In His Grace, twe

Tracey, I don’t know if you remember me, but I taught Ashlyn Spanish in high school. I just wanted to tell you that your faith and your words are a profound encouragement to me, especially for the times when I feel like I don’t know where I stand with God or when I doubt what He’s doing. Thank you so much for sharing your story. I am praying for you and your family.

Hi Tracy! Today is my first day reading “twewordplay” and it’s not a surprise to find that you’re encouraging others. Thank you for your willingness to share your journey so openly and honestly. Praying for your healing. Clacy Madison

Hi Clacy 🙂 So good to hear from you. Thank you for prayers! The honesty is a risk worth taking for His Glory. I am sooo thankful that God can call encouragement forward 🙂 So appreciate you looking me up AND commenting. Blessings, twe

Tracey, you are an amazing person and inspiration to all. The Lord is glorified in your authenticity and Spirit-led, Spirit-yielded life. The joy of the Lord is your strength. Love and prayers being lifted up for you.
Love, Leigh

Thank you Leigh for reading dear girl! Your kind encouragement breathes life across my striving soul. It’s so gratifying to hear from you that God is coming through loud and clear. I so hope for His goodness to prevail. His Joy gives life. XO twe

Tracey, I have been reading your blog for about six months. I have two friends who are also dealing with ALS. Thank you for sharing your life honestly. It’s hard to imagine having grace to walk through this, but your words give me hope for my friends and hope that, in my life, whatever I face, He will walk with me. I pray for you as I pray for my friends. Linda Boe’

Thank you Linda for reading. I am deeply sorry to hear about your friends diagnosis. I’ve just prayed for them and will continue to do so. Oh how we all need hope? A quote from George IIles says, “hope is faith holding out its hand in the dark.” Blessings, twe

You are so honest, I can’t even imagine what you have been through. I don’t know how I would handle it. Yet the fact that you are still praying and even talking to God humbles me. You are such a fighter. You give me hope Tracey, thank you for being here and sharing your journey. Blessings, Diana

Hi Diana, thank you for your generous compassion. It’s a rough road, but if I could not travel it with my God, my feet would never hit the floor. It’s His love that directs me forward. Your encouragement means so much to me. Blessings back to you and yours. twe

Tracey, you encourage and challenge me to live, love and hope far beyond my comfort zone. You are precious and beautiful in His sight. I thank my God every time I think of you! Your Kingdom centered living is touching lives generations to come. Praying rich blessings on you and your family. Thank you for your willingness to share your heart with us. Love, Kris Ann

Dear Kris Ann, Thank you for the encouragement. It was a tough post to publish. Honesty is one of the ways I know to honor Him and to offer authenticity that validates all our journeys. Your thoughts and prayers are a wonderful blessing in my life. love muchly, twe

Dear Tracey…Yesterday’s video with Nick was perfect timing to shake me from a private little pity party I was throwing! Then sweet Onalise shared a devotion this morning about an “AHA” moment and its 3 ingredients: a sudden awakening, brutal honesty and immediate action. And if I am missing either the honesty or action, I will miss out on my full portion of His grace, peace and presence for this great day. And THEN finally, you pour out your heart life so filled with love, gratitude, truth and more ACTION in your heart than I could ever dream of! Your honesty makes you real and your faith allows you to surrender to His will and show/display/model/teach us how to know and receive TRUE joy through suffering. May God be praised and glorified by you this precious day, and may He give you my little portion of His grace, peace and presence today so your cup runneth over and spills forth unto your soul’s soul. Much love today.

Tracey, I forgot to share my “AHA” moment of my day…no matter the extent your disabilities, YOU remain HIS arms and feet and light unto this world.
Humbly yours with more gratitude than I am able to express.

Dear Annie, thank you for such a generous reply. I am so thankful God’s grace revealed joy in this journey. I feel and experience blessed joy but I don’t know if I express it. It comforts me to know the Kingdom significance of His joy is finding it’s way through our messy coping workings. I feel affirmed in His call to walk out my heart life as we travel together.You, Precious Friend in Him, twe

Thank you Christie. I would hope and pray God will not waste anything I’m gleaning from the loss and great love along the way. Your faithful reading and comments are so encouraging. Keep praying, plz! yours, twe

Tracey

Hi! Welcome!!! I love my Lord, my family/friends and play with words. I am married to my best friend and have four lovely daughters. We struggle with my battles against ALS, but rejoice in God's love and our relationships. God has made this small Blog a place of community and encouragement. Each day, choose joy :) My Blessings, twe

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